Tuesday, September 27, 2011


Last night, as Oscar was heading to bed, he wanted to bring the book he is reading -- Honus and Me -- along with him.  When I said no, his shoulders rolled forward, his arms swung at his sides, his chin quivered and tears beaded on his long lashes. He almost dropped to the floor into a w-sit and screamed into his palms. Usually when he reacts like this it means that he has some plan that we are foiling by denying his request.  Clearly he wanted to sneak in some reading after lights out.

Oscar, who is nearly 11 and has Prader-Willi syndrome, struggles with sleep – he goes to bed earlier than his siblings and still naps for a couple of hours every afternoon. Even so, some days he’s barely keeping his eyes open at school despite several “sensory breaks” to get his internal engine revved up.  He’s many years overdue for the sleep study that will probably show that he’s not moving into the deepest cycles of sleep and, in fact, is awake much of the night.

I’m often anxious about getting him the sleep he needs to function at school and at home.  With less sleep his behavior is more volatile, he’s less flexible, has trouble concentrating and moves even more slowly than usual. And, because of Oscar’s naps, I’m always asking his siblings to use quieter voices in the afternoon.  I snap when one of them scrapes the kitchen stool over the tile floor or accidentally slams a door.  I’m especially reluctant to invite their friends over to play.   The afternoon hours are stressful for me and boring for Abe and Ruby.

I’m so tired of this dynamic that we are plowing forward with renovations on our dilapidated old house so that we might be able to sell it and find a home that works better for our family.  Oscar needs to have his own room farther from the bustle of our household and Abe and Ruby need a space to play with friends without worrying about waking their brother. 

At times like this, when I am surrounded by moving boxes and piles of stuff to donate, when I’m carting crates of dishes over to the house we are paying an extraordinary amount of money to rent for two months during the renovations, when I’m consulting with stagers and kitchen designers about what color to paint the house and which faucet to buy so that it is more likely to sell, I get a little overwhelmed and go down that scary path of “what if”. What if Oscar didn’t have Prader-Willi syndrome? What if we’d been able to maintain this house all along, or didn’t need more bedrooms, or didn’t have to stay home every afternoon (or, while I’m at it) could walk to get ice cream at night more than once a year because we felt like it? What if…

That path leads nowhere.  And truthfully I’m excited about the changes we’ll make to this house. I’m even excited about being in a new space for a few months.  It’s not all bad, this path we are on – it is just too often overwhelming.

Oscar’s tears stopped quickly last night. He stood up tall, pushed his shoulders back, calmed his voice and clearly articulated his position that he is a 5th grader now and that 5th graders are responsible enough to keep their books in their room without being tempted to read. I was impressed with how he pulled it together, and, uncharacteristically, I struck a deal.  If he manages to be ready for school  -- dressed, backpack packed, shoes on, teeth brushed -- every morning this week by 8am with no reminders he will earn the privilege of having his book in his room with him at night. 

Oscar giddily accepted that challenge.  Thrilled and confident in his ability to prove to me that he is ready for 5th grade responsibilities, he turned again toward his bedroom, but then peeked back around the corner and said in a silly French accent:

“Yoo vill be soopriz-ed!”

I laughed so hard, at his humor, at his funny little accent, and at our crazy crazy life, that the other two kids came running.  (“What is that sound? Mommy laughing? It couldn’t be!!”)  And it occurred to me that what is interesting about this path that we are on, this path I love to despise, is that I am often surprised.  And Oscar is most often the one who surprises me.


Mary Hill lives in Berkeley with her husband Paul and three children, Abe, Oscar and Ruby. 


  1. Oh Mary, I was nodding my head up and down and smiling when I read your post. Nicholas does the exact same drop to the floor in a "W" sit when he is very angry. I am surprised he has not damaged his knees. Loved Oscar's new accent! A lovely post, thank you.

  2. Mary, it's so good to read your words. I've missed your blog and you. How exciting that you are making such a huge and positive change -- exciting and scary, I'm sure. I hope you'll continue to write and keep us posted --

  3. LOVELY!!!!!!!
    I think you described our lives perfectly.

  4. Mary, I loved this post and could totally relate to it! We moved last year into a house more accommodating to Nolan's needs (primarily an older home with a kitchen door that closes). We bought it before we sold the old one and I thought I would lose my mind trying to manage both homes, all the packing and unpacking, trying to fix up the old one to entice someone -- anyone -- to buy it, all to accommodate his PWS. All that along with walking on eggshells with all of his daily needs and his sister taking her usual back seat. All the things you describe are things we too live with every day. It can be hard not to think "what if" on some days, or perhaps many. But I also could relate to the wonderful surprise when Nolan is uncharacteristically flexible about something, or interjects some humor into a situation. How refreshing it is to laugh. Thanks for an uplifting post. It made me smile :-) And of course, best wishes with the move!!

  5. Thank you all....your encouragement is so comforting in this craziest of weeks! And Jennifer -- you made me laugh too -- we are also looking for a house with a kitchen back in some out of the way corner of the house with a door that closes...the kitchen no one else wants!!

  6. Beautiful. I love the line "this path I love to despise." I recognize that.... and love the sound of your laughter. Bravo!

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